Hi, my name is Fayth and I'm raising funds for my niece, her husband, and their sweet baby girl, Ellie. The funds would be used to help offset their expenses while they're away from home in Pennsylvania at the Children's Hospital of Philadelphia and while they adjust to life at home with a newborn with medical needs. Matt and Ashley have wanted nothing more than to become parents. They waited until they were both in a good place in their careers and thought they had it all planned out. Of course, the universe had other plans. As most of you know, they found out their daughter had a congenital diaphragmatic hernia when Ashley was 13 weeks pregnant. This means that while Ellie was developing in utero, her diaphragm did not form the way it was supposed to. This allowed her abdominal organs to grow inside her chest cavity. Because of this, her lungs did not develop the way they were supposed to. After an extensive work-up at home, they transferred their care to CHOP in Philadelphia as they are the experts in treating CDH. Here, they learned how severe Ellie’s defect was and that she would likely require at least a 3 month NIICU stay if they were able to stabilize her after birth. They followed with CHOP monthly prenatally and planned to relocate to Philly when Ashley was 34 weeks pregnant to be in the area in case she went into labor early. With Ellie's diagnosis, one of the most important factors that would increase her chance of survival was being born at CHOP. Babies with CDH are extremely fragile before they are repaired, so much so that at CHOP they do the repair in the NIICU to avoid the babies destabilizing on the walk to the OR. Very unexpectedly, Ashley's water broke 10 days before their planned move while at home in CT. They were able to get to their home hospital and because Ashley was not yet in labor they were able to transfer her (still pregnant) to CHOP via helicopter. There was a very high chance Ellie would require ECMO (heart and lung bypass) when she was born given the severity of her defect. Her prematurity and small size would have made this intervention very risky. Almost exactly 1 week later, Ellie was born on 5/9/23 at 4lbs 11oz. Thankfully, she immediately started showing everyone how very strong she was. She blew everyone away with how well she was doing and did not require ECMO. She underwent her repair surgery at 9 days old. Unfortunately, she developed a very large pneumothorax (hole in her lung) after surgery which required an emergent chest tube and immediately after surgery she was very unstable. After a very scary night she started to improve and stabilized. This set her back a bit but she continues to persevere and makes improvements everyday. There have been many highs and many lows throughout Ashley, Matt, and Ellie's NIICU journey so far. They have been at CHOP for about 2 months and while she has made big strides her team has not yet started talking about discharge; Ashley and Matt anticipate to stay a minimum of another 4-5 weeks. Thankfully, Matt has been able to work remotely throughout this journey. Ashley works as a Physician Assistant but is unable to work remotely given that she is licensed in CT. When they initially got Ellie's diagnosis and timeline of the care she would need they figured Ashley would return to work as soon as they got home and Matt would take his paternity leave to stay home with Ellie. However, it has become clear that that plan was unrealistic. Ashley, Matt, and Ellie will need some time to adjust to being home when that time comes, and unfortunately, that means Ashley won't be able to go back to work right away as planned. They could use the peace of mind knowing they are taken care of by all of us who love them. Any amount you can donate will help alleviate the anxiety of taking even more time off from work in this hectic, and oftentimes scary, journey they are on. Ellie is a warrior and so are her amazing parents.
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